Friday, June 19, 2015

Put extra Mayo on mine, please!

There's a lot to say, so I will try to find the shortest way through all of this, but since the last time I posted, I have had the spinal cord stimulator removed, where I recovered from, pretty darn well.  I have been walking every day and have returned to Stand Up Paddling again, which I do most every day. It's sort of comedic to see me, since I generally fall more than I'm up, but I'm getting better each time I give it a go.  David has been joining me on his SUP board and he seems to be enjoying it as well!

On our way to Rochestor, I began experiencing some pretty severe pain in the left side of my jaw. I bought just about everything on the (legal) market to kill the pain or numb my teeth, and thought it would hold me over until my already planned dentist appointment next week.  Not.

We pressed on and I managed to make it to my first appointment here at Mayo on Thursday morning.  The appointment was with the psychiatry/psychology department, where I did over 4 hours of cognitive function tests. I suspected it would reveal some significant memory issues, but really wasn't pleased at the other findings.  Basically, the doctor said my memory was fair (not good, and remembering names is very, very challenging), but that my higher order thinking that involves problem solving was seriously compromised. I also knew this, but didn't quite know how to explain it...which is actually part of the issue: ironically.  In lay terms, I know I need to get from point A to point B, but I get confused when I try and determine the steps it takes to get from A to B.  So, the short of it is, they are doing a PET scan on Tuesday to rule out any degenerative brain disease.

After my morning appointment, David located a dentist who could see me immediately.  Thankfully, it turned out to be a very good dentist, because I apparently clinch my teeth (HARD!) and cracked two teeth badly: one on top and one on bottom. As they drilled the bottom tooth (which felt the worst), they hit a nerve and I learned I could levitate.  Poor David could hear me screaming from the waiting room and was getting pretty anxious to get back there.  Well, they discovered the crack was a zig zag across the entirety of my tooth, so the Dentist had to send me immediately to an oral surgeon, as the only option was to extract my molar.  With a lot of happy gas, local anesthetic, and three hard pulls, my tooth came out - roots and all. Thank God, as otherwise, it would have involved surgery on the bone. I guess having loose connections paid off in that regard.  But, I still had the other tooth to deal with, so I had to return to the dentist, and thankfully, he was able to drill through the middle of the tooth without it breaking apart. He was able to avoid a root canal and simply put a temporary cap on it, that will last me until I get home.  He also fitted me for a device that he thinks will solve my headaches (he's not a humble man), since I clinch my teeth. I had a mouthpiece prior to all of this, but he suggested this was the wrong solution and fit me with one that covers just my front teeth and actually prevents my teeth from ever touching each other.  He called in a favor from his friend at the lab, they did an impression today, and I'll have that device ready to go before we leave here on Tuesday night.  Overall, my teeth are much better but my jaw feels like an 18 wheeler backed over it.  And let me just tell you that brushing and flossing doesn't prevent this, because I'm slightly OCD about that and my teeth had no cavities or issues other than the fact that I was breaking them to pieces while I slept.  How nice.

Oh ya...I failed to mention that our two day stay at Mayo has turned into a week-long stay.  Because they added the PET scan and after today's appointment with the headache specialist on the neurology team, he added a test called a cisternogram.  This doctor was very thorough and seemed to have a lot of good ideas leaving us both feeling like we will either leave here with a definitive diagnosis and solution or at least a plan to address the headaches.  The cisternogram is basically another spinal tap with some special type of contrast that will help them determine if I have a spinal dura leak.  Although they did an MRI a year ago to try as they suspected this same thing then, the doctor today suggested that an MRI is not nearly as conclusive as this test, as it can overlook a small leak.  So, the cisternogram will take place on Monday.  I guess they evaluate the results of this test at 24 hour, 48 hour and 72 hour intervals to see what happens, but the doctor said they would pretty well know what's going on, if anything, by the 48 hour mark.  Therefore, he scheduled me to return to see him late Tuesday afternoon, when he will review the results with me and if all is clear with those results, he will give me a medication regime to follow to try and resolve the headaches.  Of course, if the PET scan reveals some sort of degenerative brain disease, then we might discover the headaches are attributable to that disease process, and in that case, there may or may not be a way to resolve the headaches.

This afternoon, I also met with the original neurologist (Dr. K),  whom I saw last time I was here, and am really confident he knows what he's doing.  I guess he was the fourth person since we've arrived this week who called me "complicated," so I'm pretty sure I'm getting that tattoo'd on my forehead.  Dr. K also ordered an evaluation from the cognitive neurology specialist.  Unfortunately, that Dr can't see me until September, but Dr. K assured me that he is involving the head of the neurology department to urge him to see me before we leave next week.  He wants to get a better understanding of what is going on with my cognitive functioning, and if we are in fact, dealing with a degenerative brain disease, then he wants to know what it is.  He warned me that if that is the case,  there is likely not too much they can do about it.  He said he really didn't think I had Alzheimer's Disease because he felt like it would have shown up on a the previous MRI, but he said there was the possibility that we have just caught whatever disease this is, at its earliest stage and we, therefore, won't be able to determine what it is until we get another MRI in a few months, from which we can compare to previous MRI's.

At the moment, David and I are sufficiently overwhelmed, but terribly grateful for a very nice dentist who has made us swear we will take him out for a beer when we come back in September.  We are also very grateful for food delivery to our room from the local restaurants, rather than hotel room service (which they don't have). I am VERY grateful for noodles since I can only eat soft foods in my desperate attempt to avoid dry sockets.  We are incredibly humbled by the love, care and generosity we have received from all of you.  We feel wrapped up in God's love and know that whatever happens here in the next few days, we will make the best of it.  Our wedding anniversary is Monday, so we will definitely order in a special meal (that's supposed to make you laugh!).

I'm sure there is more...but I'm tired of writing and I'm pretty sure one friend in particular is very tired of reading (you know who you are!! :-) )...oh, and our Greek food was just delivered.  Oh boy...couscous for me...steak kabobs for my sweetie.  Life is good...

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